Day 31 of Word Count Blogathon 2011:
Thanks to Michelle Rafter and All the Bloggers

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Even though there is plenty of important health news to write about today, I would be remiss if I didn’t set aside this final post to thank Michelle Rafter and more than 180 bloggers who pitched in to share in Word Count’s Blogathon 2011. People have egged each other on throughout the month and we have picked up new social media skills, made new friends, and exchanged posts.

I launched my blog, Patient POV, at the end of March 2011. At the time, I was posting maybe twice a week. Stepping up posting for 31 days straight definitely enhanced the visibility of my blog.

I have been passionate about my blog and love the camaraderie that came with this challenge. The structure has been a godsend. I learned to be a bit more self-reliant on WordPress, yet know when consulting an expert makes sense.

Tomorrow, we are having a blog wrap-up party. I hope to participate in more writing challenges, such as #madwriting and shorter blogathons ahead.

Tomorrow, I will be pushing for a new habit: getting my posts up first thing in the morning, instead of late each day EST –perhaps the worst time to secure visibility. I also hope to strive for more variation and breaking up posts into more manageable sizes.

Back to health and medicine first thing in the morning.

I wouldn’t mind setting up a collaborative medicine and health blog challenge. Let me know if you are interested in trying something like that on twitter at lauranewmanny or in the comments below.

WordCount Blogathon 2011 Wordle for Patient POV

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Patient POV Keywords so far

This post is a suggested assignment from the Word Count Blogathon 2011, which is concluding May 31, 2011.

For my blog, I am not thrilled with this cloud. The program Wordle supposedly scanned my blog and picked out keywords.

However, Wordle missed a lot of the posts done outside of the past two weeks so this is an inaccurate representation of what’s been discussed here. Moreover, I have spent a lot of time deleting some useless phrases and clearly missed some.

Anyway, that’s it for tonight.

Back to regularly scheduled blog posts in the AM.

 

 

6 Types of Patient Stories We Need to Hear More About

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I hope that patient stories that I tell here can really make a contribution to helping healthcare match what really matters to patients. That means that I’d like to tell stories that have been invisible or bear continuing exposure, for health care systems to improve.

Here is a draft list of 6 types of stories—and I am open to suggestions—for the kind of stories that we ought to hear more about.

1.    We need to hear more from people who are isolated because of their medical condition, or because the healthcare system is not hospitable to them. We need to understand why we isolate them, and see whether we can change that. You guessed it: I believe in diversity and stimulation. I want our healthcare system to treat them like individuals, not like some category.

2.    I’d like to tell more about medical error stories that don’t blame workers or the process, so much as focus on ways patients feel objectified, when involving them might yield far better outcomes.

3.    Given the economy—which is not getting better for many (housing, jobs, access to insurance and care remain problematic), we need to hear a lot more about the impact of these factors on health and sickness, bankruptcy, housing, and a whole lot more.

4.    Clinical trials are considered one of the best ways to advance science-based medicine. Yet many people have reservations about enrolling, and for many trials, enrollment is slow. How do you view participating in clinical trials? Could they be designed better? Do you feel patient protections are in place?

5.    Funding and cutting programs make a big difference in people’s health. Do you know of a good program that is being cut? Or do you see an opportunity to invest in an innovative program that could really improve health?

6.    There is a sixth: the story I don’t even know needs to be told but is waiting to surprise me.

This list is rudimentary, put together this holiday weekend. As I said, please make suggestions in the comments or send me a discrete email to patientpov “at” gmail “dot”com. I respect patient privacy.
Happy Memorial Day to you!

Memorial Day Comes Early: Notes on Gil Scott-Heron and Black Health in America

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I can’t give you the news the way poet Gil-Scott Heron would, but I can imagine some of the social realities that would move him to poetry and song.

It’s a nasty time for blacks and African Americans in the United States. At least, the Celebrity Apprentice is out of sight for now.

Thank you to Khadijah Britton, for her blog post on Scientific American this week, calling out Satoshi Kanazawa, for trashing black women as inherently unattractive, and calling Psychology Today to task for publishing it; thanks to Frank Oldham, Jr. http://www.patientpov.org/hivaids/national-association-of-people-with-aids-condemns-new-york-posts-violation-of-hiv-status-privacy-in-dsk-story for challenging the ugliness in the New York Post and the Dominique Strauss Kahn spin machine, for violating the maid’s and all her neighbors’ HIV status privacy. Get over it: we know who the victims are.

Yet the spinmeisters continue, while the litany of urban poverty and racial disparities goes on.

Health, housing, jobs not quite up to par.

  • Boehner proposing a $600,000 cut to the WIC (Women’s Infants’ and Children’s Program) nutrition program for the poor that improves health, while cutting costs.
  • Despite all the effectiveness of early intervention for HIV, ADAP (the AIDS Drug Assistance Program) is getting hit. Waiting lists in May 2011  soared to more than 8,000 people.
  • HIV disproportionally affects blacks, According to the CDC,  blacks/African-Americans account for 12 percent of the US population, but represent 50 percent of people living with HIV/AIDS. HIV also disproportionally affects the urban poor and folks in the southern United States.
  • Of women living with  HIV and AIDS, well over 80 percent are black/African-American.

It is not a pretty picture as we look at  “AIDS at 30.”  Racial disparities persist.

Gil’s poetry moved people. Rest in peace, Gil. I will always remember “Whitey On the Moon.”

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Is Lap Band Surgery Appropriate for Obese Teens?

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Earlier this week, the LA Times reported that Allergan was filing an FDA application for its lap band surgery for teens as young as 14. The application follows Allergan getting FDA okay to lower weight threshold for lap band surgery in adults, adding millions more candidates for the surgery.

Allergan’s Lap Band involves placing a silicone ring around the stomach that restricts food intake. According to Allergan spokeswoman Cathy Taylor, about one-third of US teens are obese and obesity is a risk factor for multiple serious health conditions. Clinical trials in teens are underway.

Critics have pointed out that there are no long-term outcomes data that lend confidence to using lap bands for 50 years and more. They have pointed to the need to remove or replace a lap band. Proponents say that obesity has serious consequences, including elevating the risk for hypertension, diabetes, coronary heart disease, and more.

What is your point of view? Do you think that 14-year-old, obese kids should consider lap band surgery? Or bariatric surgery? Do you think that weight-loss surgery of any type would work as a long-term intervention for obese teens? If the goal is to reduce the numbers of obese kids, what solutions would you propose? How do you think obesity in teens should be dealt with?

Acclaimed Books, Films, and Projects About
Alzheimer’s Disease, Other Dementias, and Memory Loss

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Books, films, and innovative projects on Alzheimer’s disease, dementia, and memory loss are growing. I have assembled a short list of them.There are many foreign films, particularly from South Korea and Japan that are excellent. I hope that US distributors make them easier to get. Please feel free to add more in the comments section after this post.

Anne Davis Basting. Forget Memory: Creating Better Lives for People With Dementia. As Basting writes: “Wrestling with the meaning and role of memory in our lives can help us to understand our fears of its loss – and to imagine how investing in a “cultural cure” (raising awareness and reducing stigma) can go a long way toward relieving the symptoms of memory-related diseases and conditions.”

Anne Davis Basting. The Penelope Project. Innovative theater project. As Anne writes in her blog: “After 2 years of explaining, I think I finally made sense. This show is about telling the vast majority of America that they are wrong aboutold people and retirement communities. Regardless of disability –this is and can be a place of growth and learning. Like Penelope, we have dignity, complexity, cunning,wisdom, nobility – even if the world simply thinks we are waiting and doing nothing.”

David Shenk. The Forgetting: Alzheimer’s: Portrait of an Epidemic. If you  read one book on Alzheimer’s, this is an excellent choice. Shenk is an excellent journalist and storyteller. Also available on PBS as a film in English and Spanish.

Hilda Goldblatt Gorenstein. Hilgos Foundation. I Remember Better When I Paint. 2009 documentary that shows how creative arts may help Alzheimer’s patients re-engage in life, through painting, visiting art museums, and performing music. Available on DVD.  Youtube trailer for film.

Lee Jae-han Director. Eraser in My Head also called A Moment to Remember. Outstanding 2004 South Korean film. Available for download from South Korean websites.

Memory Bridge. The Foundation for Alzheimer’s and Cultural Memory. Memory Bridge creates programs that connect people with Alzheimer’s disease and related dementias to family, friends, and other people in their local community. Memory Bridge also creates programs that show  the depths of memory that dementia does not erase

Nancy L. Mace, Peter V. Rabins. The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss. (A Johns Hopkins Press Health Book) now in its 5th Edition. Many consider this the best caregiver’s guide.

Preventing Falls in Hotel Bathtubs

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I wouldn’t have considered posting this, except that I am in the WordCount Blogathon and don’t want to miss a day. I fell in a hotel bathtub in a “boutique luxury” hotel this morning, arrive late to a meeting, and then traveled back home by train. I am pretty badly bruised and home from my trip.

I am going to think twice about staying in “boutique”AKA “old” hotel in the future. Apparently, they don’t have to have a sturdy rail to hang on to. In many states, you only need to have a rail if the hotel is newly built. There was no such thing in or near this bathtub. A mat, which I used other days, was not close to the bathtub so I didn’t remember to put it down when I entered the shower. Not that a mat is the best protection.

In medicine, we’d call this an “adverse event” or an “avoidable error.” I am not going to sue, but I kind of wish sites like Travel Zoo, Expedia, and Priceline tabulated accidents at hotels. The reviews don’t leave space for that and people are getting older everywhere.

Can we change things so that hotel bathtubs are not hazardous? At any rate, like I said, I wouldn’t have put this up, except it shook me up and I am too tired to write much more of a post tonight. I think there should be more stringent requirements for bathroom safety in hotels everywhere.

I’ll be back to normal programming tomorrow. Good night all!

 

Writing About Alzheimer’s and Dementia Gets Complicated

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Now that I have spent three days listening to expert neurologists, demographers, caregivers, and policy people talk about Alzheimer’s, I come away from the meeting with a sense that the story is complicated, and that I hope it is not reduced to talking points and sound bites. I didn’t feel that it was at the meeting, but I can see how reporting could go awry, and not really help readers or society out.

I don’t want to cover Alzheimer’s disease pursuing the “awareness” route, namely pressing how many millions of Americans have the disease, and how unabated, with the graying of America, these numbers will rise astronomically. There is no cure for Alzheimer’s disease. Existing drugs are not all that beneficial, and when they help alleviate symptoms, it seems to be for a very brief window, in a subset of patients, that nobody has convinced me you can predict. Are we at square one? Should we grab at any way to mobilize the troops for the disease?

There’s more negative news: clinical trials for years have been negative and clinical trial enrollment is poor. Can it be improved? Should I promote enrollment in clinical trials? What might a patient gain from participating in a clinical trial? What about informed consent? How do patients with Alzheimer’s disease give informed consent?

Is using amyloid as a biomarker something that should be abandoned because reductions in amyloid have not shown improvements in the disease? What is the state of the science?

What about labeling patients with mild cognitive impairment or Alzheimer’s? Is mild cognitive impairment an entity that is meaningful, or should it be discarded? Some speakers at the Alzheimer’s disease forum were skeptical about the classification, which is not used in many parts of the world. Will mini-screens being in primary care offices become popular because experts and advocacy groups say that they will reduce stigma and work effectively? Under what conditions, could Alzheimer’s disease be overdiagnosed? Remember, older people are on many medicines, they can have electrolyte problems, hearing problems, and other conditions that could impact on diagnosis.

What kinds of protections are in place for people? There is a big push by pharma and the Alzheimer’s Association to be certain to record an Alzheimer’s disease diagnosis in a medical record. That may seem relatively innocuous for old, retired people, but could some people lose jobs, lose health and long term care benefits, be barred from housing? What is the upside to getting a higher count of Alzheimer’s patients? Do the benefits outweigh the risks?

I also think that battles over Medicare need to be discussed with the possibility that many more Americans are likely to be afflicted with Alzheimer’s. Where will they get care? How do Americans want it to look? Will Alzheimer’s patients be warehoused? Can community programs manage people with end-stage Alzheimer’s?

Should innovative non-drug approaches in the arts be funded more widely? How can we reduce stigma about Alzheimer’s disease? I’d like to know a lot more about what is happening today to people with advanced Alzheimer’s disease. Can they find placements? Where? What are equitable ways to fund Alzheimer’s and dementia care?

Long Term Care

How should the country support long-term care? Should children be taught, as they are in lower school, in some parts of Japan, about caregiving, dementia, and Alzheimer’s? What about minorities, lesbian, gay, bisexual, and transgender people with Alzheimer’s? What about aging single people, who are all over America, and growing around the world? What services are available for them? How will we plan for them?

Alzheimer’s disease issues do not exist in a vacuum.

People should be aware of all of these issues, as people think through a national plan for Alzheimer’s disease and think through federal and state policy. I am intrigued that some countries have national plans for Alzheimer’s and I hope to write about them. Perhaps they will be instructive for the US. Far more patient stories need to be told to understand the complexities.

Alzheimer’s Disease Issues – Day 2:
Let’s Keep the Conversation Going

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I spent today at an all day Alzheimer’s meeting, taking notes and tweeting. I am also exhausted. Many of you know that this is my 23rd consecutive day blogging here. There are a lot of pluses to posting every day, but on a night like this, where I have been focusing all day on new, often dense material, I run the risk of being incoherent.

Here are some issues that are related to aging, Alzheimer’s, and dementias, that we all might want to think about:

I am tremendously concerned about the future of Medicare and access to affordable drugs and long-term care services. I also worry about extension of the retirement age that is under discussion when so many Americans over age 50 don’t even have work or are under-employed. News that women are not bounding back to work as quickly as men is frightening. The jobs picture must change.

Like many disease categories, Alzheimer’s is spoken of frequently in terms of early detection and urging transparently charting it on people’s medical records. Yet, as speakers pointed out, once someone is labeled as having cognitive problems on health records, they may become more dispensable at work because Alzheimer’s care is extremely costly. How can we come to grips with this?

Stigma associated with cognitive impairment remains huge, current treatment may alleviate symptoms in some, but treatments only help a small proportion of a people for a relatively small window of time.

There is a movement promoting using creative arts to engage people with Alzheimer’s. Today, we saw the movie, I Remember Better When I Paint, available on DVD from the Hidalgos Foundation. There are people around the US and elsewhere working with theater, dance, music, and art to engage Alzheimer’s patients.

We have a long way to go in shaping a fair and equitable national planning strategy for Alzheimer’s care. This conversation should continue.

Follow me on twitter at lauranewmanny.

Alzheimer’s Disease Issues 2011 Fellowship Begins

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I am in Washington at the National Press Foundation’s Alzheimer’s Disease Issues 2011 Fellowship with about 15 other journalists. The program runs through Wednesday. Today’s session was a half-day, with presentations by Richard Jackson, director of the Global Aging Initiative, Center for Strategic and International Studies, and Harry Johns, President and CEO of the Alzheimer’s Association.

Global Age Shift

Trends that struck me in Jackson’s global aging presentation were as follows:
1.    Falling fertility is near or beneath replacement in countries, including China, Brazil, Mexico, and Chile. In Turkey, Iran, North Africa, and Indonesia, fertility is also falling fast.
2.    Rising life expectancy is bringing added financial burdens that few developed countries can handle.
3.    As the population ages, productivity in the workforce goes down and growth slows.
4.    Savings and investment drop.
5.    As a result, families get smaller and people become more risk averse. Smaller families may find it more difficult to socialize their children to care for elders as they did traditionally.
6.    A rising share of the population does not have a child to look after them, which in my mind, puts more elders at risk of poverty in old age.
7.    Right now, Germany and Sweden look the best in terms of funded retirement savings. Germany and Japan both have mandatory long term care insurance deducted from income.
8.    There have been Draconian cuts in pensions worldwide.
9.    However, Germany stands out as one country where you don’t have to become poor to get old age/long term care.

Planning for Alzheimer’s Disease Burden in the United States

Turning to the United States, Johns compared the stigma surrounding Alzheimer’s to where cancer was in 1961, when many doctors did not tell patients about a diagnosis of cancer. He pointed out that available treatments are at best “”symptom improvers’ that don’t work for everyone and when they work, they may not work for long.”

Legislative changes at the federal level are promising, including the National Alzheimer’s Project Act (NAPA), which passed in December, as part of the lame duck session in Congress. It requires developing a strategic plan for Alzheimer’s in America, according to Johns. As part of the “Welcome to Medicare exam,” including an annual cognitive measure will be added to the annual physical.

The HOPE (Health Outcomes, Planning, and Education) for Alzheimer’s Act (H.R.5926), sponsored by the Alzheimer’s Association, is currently making the rounds in Washington. It is endorsed broadly, with bipartisan support. Change.org has a petition on the web  urging the public to sign it and “Stand with the Alzheimer’s Association and urge members of Congress to support” it.

According to Johns, the Hope for Alzheimer’s Act will encourage discussion about Alzheimer’s, promote charting in the medical record, and advance discussion about Alzheimer’s and care.

The change.org petition states: “Too many of America’s baby boomers will spend their retirement years either living with Alzheimer’s disease or caring for someone who has it. Even worse, many of the estimated 5.4 million Americans with Alzheimer’s disease do not have access to a formal diagnosis or care planning services preventing them from planning for the future. As we work for Alzheimer’s research, we must ensure individuals living with the disease have access to services that can improve their quality of life today.”

This is the second time that the Foundation has run this event, which is underwritten by Pfizer,the Lawrence B. Taishoff Endowment, and the National Press Foundation Program Fund. A few journalists and bloggers have criticized the program in the past because of Pfizer money. Pfizer is in the Alzheimer’s market so anyone could argue that in supporting an educational program on Alzheimer’s, journalists who cover Alzheimer’s information gained at the meeting, could use that information to enhance Pfizer’s market share. That’s why I am being up front about this here. According to NPF President Bob Meyers, Pfizer has absolutely no editorial impact on the program, but before the program, Pfizer receives a proposed agenda and budget.

I don’t know whether I’ll have the energy to blog every day of this meeting (it’s Alzheimer’s all day for 2.5 days ahead), but if you have any concerns about Alzheimer’s patient care, caregiver issues, or funding, please point them out in the comments.